Wednesday, October 26, 2011
She must have cried herself to sleep every night for seventeen months. That's at least how long it would have taken me to put my words onto paper without falling apart.
I am referring to an article I was offered to read. This article was written by a mother whose son has Tay-Sachs disease. A child with this horrendous disease rarely lives to see their third birthday. This woman's son is now 18 months old. Here is the direct link for those who choose to read it: http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?src=tp&smid=fb-share. Be warned...have a tissue box in hand. For those who choose not to read the article, I will summarize for you.
Emily Rapp, is a professor of creative writing at the Santa Fe University of Art and Design. She tells how she had genetic testing for Tay-Sachs, not once, but twice. Both times the results were negative. None of the prenatal testing came back positive. Emily and her husband were excited, looking forward to a happy, healthy baby. They read all the prenatal books to ensure that they would make the best choices for their baby. I can certainly relate. Both my husband and I had $3,000 worth of every genetic test available. We came out with 100% perfect results. Like Rapp, we did the same thing. We read the best books, were staunch advocates for breast feeding, I even put ear phones on my belly for an hour each day, playing classical music while I napped (my son was calmest when Vivaldi or Bach was played). My son was such a sleepy, quiet baby, that at one of my prenatal check-ups, it took almost three hours! The technician needed to take important measurements and my son just would not move. She even called in the doctor, who straddled me and massaged my abdomen to get my son to move. Again, no luck. I ended up having to come back the next day. Thank goodness my son was much more cooperative then.
I look back on my pregnancy, as Rapp must have, with spinning mobiles and fancy bedding dancing in my head. I fantasized about holding my baby in a sling as I did errands, completely non-sleep deprived (I did say it was a fantasy). I was eagerly looking forward to a perfect baby in every way, as I'm sure Rapp was.
I'm not sure when Rapp was given the diagnosis of her son's condition. I do know that the nightmare I had with my son began during labor and only started to wind down about two years ago, once all of my son's disorders were finally identified. My son was six then. Six completely draining years. Six years of ineffective bonding. I regret those six years. But I have developed such an incredibly strong, impenetrable bond with my 8 year-old son, it is as if those first six years never happened. My son doesn't remember. Unfortunately I always will.
As I was up with my baby son multiple times per night, with his colic and reflux, for just about three years, I can imagine Rapp welcoming watching her son sleep at night, sighing in his sleep and reaching out to pick him up if he needed comforting. What I viewed as torture, to Rapp would have been, and probably is, the loveliest time of her day. As my son easily had a good twenty-five meltdowns a day, starting at eleven months old, Rapp would probably have embraced laughingly that her son still had so much vigor and fight left in him. When my 18-month old flung his plate of spaghetti and sauce across the kitchen, splattering every wall, floor, and 2 dogs, and I wanted to slide down into a heap and cry. Rapp is probably flinging spaghetti herself, just to hear more laughter come from her son.
Looking back, I wish that I was aware of each of my son's disorders when he was a baby. I blamed myself for my son's uncontrollable nature and didn't realize I had prolonged postpartum depression. I would have forgiven him as well as myself for our lack of bonding those first young years. Rapp is giving her son a gift. A gift he will never be aware of, but she will. And the grief and pain will probably never fully dissipate. But the knowledge that she spent every waking moment (and unslept moment) being fully with her child, must fill her with even a small amount of gratitude. She gave of herself completely. Without self-pity or repressed anger. That is what makes her story so special. She asks the question: How do you parent a child who has no future? You don't. You throw the "rules" out the window and make each day more special than the day before.
She must have cried a bucket full of tears. I know I have. But I still have my precious son with me. She does too. But only for a little while longer.